In another world: I felt like the worst parent in the world, recalls the mother of an autistic child


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“It just came to our knowledge at that time. The entourage showed you that a child is brought up badly, that you cannot bear it. You receive millions of advice on how you should do it, then you feel like the worst parent in the world,” Adela’s mother recalls.

Today, her daughter Helene is six years old. Four years ago, parents began to notice that he behaved differently.

However, they were not met with the support and understanding of a pediatrician, who attributed Helen’s unpredictable behavior to a bacterial infection. So Ms. Adela started looking for experts herself. And for the first time, she heard of a possible diagnosis: autism.

Natalka

Natálka, 13, sleeps during the day and stays up at night. He prefers to sit in front of a computer on which he creates comics and paints pictures. As a child, doctors diagnosed him with severe autism and moderate mental retardation. The girl does not leave the apartment and can only carry her mother and her assistant near her. She didn’t speak at all until she was five, then to everyone’s surprise she started speaking English.

“She did not look her in the eye, but as if through us. It was a strange behavior, as if we were not there, ”recalls Natálka’s mother. It was the time when the daughter was only two years old.




Natálka, who became the face of the Barriers Account for people with autism spectrum disorders

Fundraising for Natálka is over

You helped 13-year-old Natalia cope with the severe disability and isolation that autism cursed for her and her mother. The barrier account has organized a public collection for her with the aim of collecting at least 110,000 crowns, which would be another thousand hours for Natálka, after which her assistant can help her. So far, she only goes to the family for two hours a week, so her care could be extended. Natálka suffers from severe autism and mental retardation, she does not leave the house at all, she is fixed on daily rituals, her mother and her assistant.
In the end, you sent an incredible 200,000 crowns, so the collection is stopped. Thanks very much!

Today, 13-year-old Natálka only wakes up after lunch and only falls asleep between 5 and 6 a.m. The bed is upstairs, but since he’s not going up the stairs, he’s going down his ass.

Gabriel’s mother also had to adjust her rhythm of life, she can only go to bed at night, when she gives her daughter the last medicine. Gabriela lives alone with her daughter, her husband fell ill years ago and a brain tumor changed his behavior.

“She becomes aggressive. And when it started towards the children, we said goodbye. It didn’t go on like that anymore, ”he admits openly. his two older children, who have a problematic relationship with Natálka.

Natálka has an assistant, Veronika, who visits them twice a week for five hours. “Thanks to Veronica, I can go get something. In the surgeries, at the doctor’s, in town, but there are very few at that time,” says Gabriela.

She had to quit her job to take care of the child, but she would very much like the assistant to be able to go there more often. “If she could for at least three hours a day, that would be amazing, but it probably won’t work. But that’s our dream,” he adds.

Half of children have no intellectual disability

Autism can be diagnosed in infancy or around 12 to 18 months of age. With age, the reliability of determining the correct disease increases. When parents first learn that their child has an autism spectrum disorder, it comes as a shock to them, says Kateřina Thorová, psychologist and methodological director at the National Autism Institute (NAUTIS).

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“Many parents imagine the hardest form, but this is not the case. About half of the children do not have an intellectual disability, on the contrary – they are very handy. And when they receive adequate support, they are then able to develop further,” explains the psychologist.

There are several thousand people with severe autism and mental disorders in the Czech Republic. Kateřina Thorová adds: “If we adapt the conditions and approach them from an early age, they can live a very happy and high-quality life.”

Does the autistic belong to a specialized school?

Parents of children with autism spectrum disorders often have the idea that they should enroll in a special school. Children who do not have an intellectual disability, but who belong to a standard primary school, and this also applies to children with autism.

“He normally tolerated the kindergarten regime, but he needed help with social matters. He couldn’t take swearing or irony, for example. He was bad about it, his assistant was very helpful in that,” says the mother of nine-year-old Kryštof, who has Asperger’s Syndrome.

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Specialist pedagogue Lenka Bittmannová adds: “Children like Kryštůfek have either average or even above-average intellect. The current legislation is already in place so that we are able, within the framework of special educational support for these children, to offer such support measures so that they can manage it in ordinary schools. »

For children with autism, classes with a small number of students are preferable. They are often sensitive to sounds and are bothered by others breaking the rules. According to Bittmann, schools’ approach to admitting children with autism is improving. Perhaps also because the methodological support has changed. For the fifth consecutive year, the distribution of financial aid to specialist teachers and aid is not decided by the regions, but by the Ministry of Education.

Social stigma?

For many people with autism spectrum disorders, the diagnosis of autism is a stigma that excludes them from society. They often have to prove to those around them that they can take care of everything else, be it work, housework or leisure. Social workers help them find suitable employment, manage communication and day-to-day responsibilities.

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“I was made fun of. It turned out at first that I couldn’t do math or physics and didn’t understand a lot of context. Also, I couldn’t express myself. This It didn’t get better until I started college,” says Martin, 32, autistic.

Because of his diagnosis, he also finds it harder to form partnerships, and they are often problematic when he meets the family of a new girlfriend. “When you don’t know what their family is doing, they start to get annoying, angry, boring. But girls today want healthy guys. And if you find an unhealthy one, it’s no use to her. nothing,” he says of his attempts to establish a relationship. It’s the same in employment.

Living with autism?

Fatigue, frustration, social isolation and stereotypes describe the lives of parents of children with severe autism spectrum disorders. Unfortunately, there are not enough rescue services in the Czech Republic and families often don’t have the money left for this. And once they have them, they have to wait at least three quarters of a year.

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Hynek Jůn, Methodical Director of Therapeutic Services at the National Autism Institute, says: “If an autistic person behaves objectively problematic – when they are physically aggressive, they injure themselves, destroy things, etc., then the social services themselves are intimidated.”

Unless a suitable social service is found for children and adults with severe autism and mental disability, and the family is on the verge of failure, a person with autism spectrum disorder often found in psychiatric hospitals.

“But where they don’t belong, because there is nothing to treat them. They are not sick, but have a permanent disability. And then they really go through the network of social services, ”explains Renata Němcová, director of the rescue service.

You can also test your child

Parents who observe atypical behavior in their children often do not know who to contact and how to proceed. This is why, in January of this year, NAUTIS launched the Autismport Internet portal. There you will find information on where to turn or how to test your child at home.

Barrier account supports people with disabilities, the consequences of illness or injury. Families with autistic people are also increasingly turning to him. The foundation contributes to their personal aid, emergency care, rehabilitation, various aids and other necessities. If you too want to help those who have been “cursed” by autism, send any amount to Transparent Barriers Account: 17111444/5500, variable symbol 999.


Listen to the continuation of the series In Another World, prepared by Lucie Korcová, tomorrow.

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